Getting married in 3 months still have ic... No improvement insight ... Doctors have no idea... Beyond depressed ....help me someone
Posted by lax mom (Member # 38743) on :
Congratulations on the marriage!!!! That's reason to celebrate!
I'm sorry you are still suffering though.
Have you been put on Flagyl, Tindamax or Alinia?
I keep getting recurrent vaginitis and these type meds are helping.
Posted by GretaM (Member # 40917) on :
Have you been treated for bartonella?
IV gentamycin and high dose d'mannose saved my sanity with IC.
If the white count is high in your urine, your doc may be able to get you IV gentamycin in a hospital.
Posted by Ellen101 (Member # 35432) on :
I have read alot of your posts and you were given alot of great ideas. Can you tell us what you have tried so we know what to suggest?
I know LDN was mentioned but I don't remember if you stuck with it long enough to see. Also diet can play a huge role. Have you tried the Autoimmune Paleo? People have had amazing success with it, but you need to be consistent.
Don't give up, there is an answer.
Posted by Splashi1 (Member # 28173) on :
Hi Tricia,
I do so feel for you. IC was one of my first symptoms. You could copy and paste this page http://www.med.nyu.edu/content?ChunkIID=21733 and see if anything might be helpful on there. I have heard that PT can be very helpful for some, and Greta M's suggestion sounds good too.
Good luck and congratulations!
Posted by lyme in Putnam (Member # 11561) on :
Better days are ahead. I believe god sees all and this can't last forever. Good luck. I'm not saying think positive, just be and God willing, things will change for the better.
Posted by surprise (Member # 34987) on :
I remember you posting test results with an infectious strain that stated only vancomycin could eradicate -
Did you ever get Vanco?
Posted by tricia386 (Member # 29623) on :
Hi all- What I have tried Im bicillin and rocphein Allinia Ivermectin Ceftin rifiampin Toni diflucan biaxin zith amox augmentin
Ldn
Dmannose cystprotek marshmallow root tea tree oil berberine
Now I'm doing oral vanco
I'm a mess... In a dark place
Posted by tricia386 (Member # 29623) on :
Tried ic diet too
Posted by lax mom (Member # 38743) on :
Have you ever had a time where your IC symptoms felt better? or has this been continuous?
Posted by Ellen101 (Member # 35432) on :
the IC diet is different than the autoimmune. How long and at what dose did you do the LDN? How about food sensitivity testing like Leap/MRT?
Posted by tricia386 (Member # 29623) on :
After alcohol exercise or a cold
Posted by tricia386 (Member # 29623) on :
Lax mom- exercise, alcohol, a cold and im rocphein offered most relief when at highest concentrate
Ldn 2.5 for 2 years cannot go up to 3.0 do not feel well
Posted by steve1906 (Member # 16206) on :
tricia386, Congats on getting married in 3 months, thats great.
I've been to that site
Posted by steve1906 (Member # 16206) on :
Your welcome
Posted by Lymetoo (Member # 743) on :
Tricia.. I know how old that pain can get!! I suffered with it for about 10-12 years before it finally got to a place of manageability. My IC no longer RULES my life.
I wonder if the key for me has been the strict diet and attention to candida/yeast that I've been focused on for about the past 13 years?
It's either that or the Lyme/babesia treatment. But I suspect that yeast plays a huge role in IC.
It's also possible that a quinolone damaged your bladder lining? I wonder about that for me. I had taken a lot of Cipro for infections when my IC got bad.
I would try the diet, etc and also up your magnesium intake in case the problem is connected to the quinolones.
God Bless!
Posted by tricia386 (Member # 29623) on :
Steve-sorry if that came off mean. Just so depressed I'm sorry
Lymetoo I have never taken cipro
Posted by Lymetoo (Member # 743) on :
Good... Levaquin? Avelox?? There are many fluroquinolones.
Posted by BoxerMom (Member # 25251) on :
Here's a paper on the differentiation of vaginoses - bacterial, lactobacillosis, cytolytic. I wonder if anything in there might be helpful. I don't know whether your symptoms are all bladder, or some vaginal.
It's written for nurses, so it's about diagnosis and treatment. It's not research.
I feel horrible for you. Who can blame you for being at wit's end?!
Hang in there. An answer is out there. Don't give up.
Posted by surprise (Member # 34987) on :
(trying to help) I don't know how long you've been on the Vanco, but my daughter did 3 weeks of it years ago, it wasn't until the end
that it brought big healing (it wiped out unknown bacteria.) Obviously you know take lots of probiotics away from it.
Do you have any GI symptoms? I am working on my GI stuff, awaiting testing results, but when I'm constipated or bloated, I feel pressure that feels like IC- like a bladder infection.
Turns out I have gastritis, which was only found on an endoscopy. Would have never known-
Hang in there- a wedding is majorly stressful for the bride! Just show up, trust God, it will be beautiful-
Posted by Pocono Lyme (Member # 5939) on :
I noticed this when looking through the information. Research on cats with interstitial cystitis shows that they may have mild primary adrenal insufficiency.
Posted by Lymetoo (Member # 743) on :
Hmmmm... I did begin Cortef for my adrenals when going through Lyme treatment.
Posted by jlcd1 (Member # 18138) on :
What about trying salt C. Im seeing crazy stuff exit from me and I know its gross to hear. My bladder gets this weird buzzing from it so who knows until u try. There is a book sold on amazon on the protocol.
Just a suggestion
Posted by Lymetoo (Member # 743) on :
A little warning though.
Vit C can set off IC. It does for me.
Posted by Dogsandcats (Member # 28544) on :
Vitamin C sends my IC through the roof.
Posted by tricia386 (Member # 29623) on :
At my witsend
Posted by Pocono Lyme (Member # 5939) on :
Cortisol's anti-inflammatory nature assists in keeping chronic inflammation and pain at bay. Unfortunately alterations of this diurnal cortisol pattern,
as seen in individuals with phase 1, 2 or 3 adrenal fatigue, may alter the body's ability to control inflammation, allowing chronic inflammatory conditions such as IC to ensue.
Research has demonstrated just how important optimal cortisol levels may be in controlling the symptoms associated with IC and
findings indicate that diurnal cortisol patterns in IC patients may have significant treatment implications.
IC patients with sub-optimal morning salivary cortisol levels less than 12.5 nmol/l were found to be over 12 times more likely to report urinary urgency than those patients with levels above 12.5 nmol/l!
Patients with higher total daily free cortisol levels reported decreased overall symptomatology.
Are you ingesting aspartame? I recently fell off my diet and either aspartame, gluten or dairy (or sugar!) set off some pain for me.
Be very careful ingesting ANY KIND of chemicals. Gluten is so evil. It just sucks you right in.
Posted by GretaM (Member # 40917) on :
I agree with Lymetoo. Aspartame is the devil. Especially in diet pops drinks gum and candies. Really irritates my bladder.
Posted by Lymetoo (Member # 743) on :
I really think it is the aspartame that got me. I ate some "light" yogurt. I would have been better off with real sugar!
Posted by poppy (Member # 5355) on :
I have just received a newsletter that links IC to adenoviruses in lyme patients. Have no idea if this applies to you or not. Is treated with antivirals. Seems like I have heard of some herbal antivirals, but don't remember which ones. Sorry, not really something I know about but I thought of you when this newsletter showed up. Let me know I will copy and paste into a pm for you.
Posted by TerryK (Member # 8552) on :
I was diagnosed with ic after having pain and frequency issues for 35 years. The pain can be so intense that it is hard to sleep at night because any urine in the bladder makes me feel like I have to go to the bathroom.
Sorry you have to deal with this. It is awful. I do my best to ignore the pain but it is sometimes impossible.
Sorry I haven't read all the posts - I just wanted to give the few things I've found helpful. They are both professional formulas.
1. Pekana brand PROSCENAT It takes a week or so to get relief and you have to keep taking it. I assume it works because it helps with inflammation but it is commonly used for painful urination and prostate.
You can buy it online without a doctor. Do a google search.
2. Herbal Vitality Urinary Antiseptic I cannot find this on-line so far. I will list the ingredients.
I'm thinking of coming up with something using some or all of the ingredients. It is over $50 a bottle (2 oz) and you use 1 teaspoon per dose (60 drops). One bottle does not go that far. It is recommended that one take this for a month. The first day you take it every 2 hours. I started it about a week ago and it does stop the pain but if I miss a dose the pain comes back.
Sometimes anti-yeast treatments will dull the pain so there may be a yeast component for me sometimes.
edited to fix the name of the abx Recently I was on an abx called monohydrate (it's actually called nitrofurantoin mono-mcr) and an antifungal nystatin for another problem and my pain almost went away. Indicates to me that it is infection.
Lyme treatment almost took the pain away after 4 years. After 1 year of being off abx the pain came back.
[ 03-04-2014, 10:31 PM: Message edited by: TerryK ]
Posted by tricia386 (Member # 29623) on :
Terry what was the abx called I can't seem to find it
Posted by tricia386 (Member # 29623) on :
Poppy please copy and paste
Posted by poppy (Member # 5355) on :
How These Three Methods Help to Stop a Stealthy Andenovirus Infection
For people with interstitial cystitis, digestion tract inflammation, or fatigue caused by a stealthy adenovirus infection
by Greg Lee
Have you ever seen a set of nested wooden dolls? As you open the biggest doll and you see a smaller one inside, and another, and another. Eventually, you finally discover the tiniest doll inside.
How are nested dolls similar to an adenovirus infection in a person with Lyme disease?
Similar to a set of nested dolls, viruses can hide within larger germs like Lyme bacteria and parasites¹
Adenoviruses are a group of viruses that commonly infect the respiratory system, digestion tract, or other organs. A person infected with this virus can present with: fever, diarrhea, rashes, cystitis (bladder infections), pink eye², or encephalitis³.
People with a weakened immune system, respiratory illness, or cardiac disease are at a higher risk from getting symptoms from an adenovirus infection. Transmission can occur by having close contact with infected people, by touching items that have adenoviruses on them and then touching your mouth, nose, or eyes. Given the similar presentation to other bacterial infections, adenovirus can be easily misdiagnosed.
Misdiagnosis of adenovirus patients was greater than 80%
In one study, 88% of children infected with adenovirus were misdiagnosed with a bacterial infection and mistakenly given antibiotics⁴
Since viruses can be nested within bacterial infections like Lyme disease, antibiotic treatment may actually increase detectable levels of adenovirus.
When larger parasites or bacteria are killed with medications, viral infections have dramatically increased⁵
In Lyme disease patients that have received extensive antibiotic or anti-parasitic medications, elevated levels of adenovirus have been detected in blood tests and electrodermal scans. If detected in immune compromised patients, they may receive the antiviral medication ribavirin. Unfortunately, ribavirin is not effective against all types of adenovirus.
Adenoviruses employ multiple strategies to evade the immune system and antiviral drugs Some species of adenovirus are resistant to ribavirin⁶. Also, adenovirus has the ability to hide within biofilms found on materials used in drinking water systems⁷. The estimated level of increased antiviral resistance due to biofilms is unknown. Since biofilms may provide an estimated five-thousand fold⁸, increase to antibiotics, there is likely to be increased antiviral resistance. Since adenoviruses hijack the nucleus of cells to reproduce, they have the ability to disrupt how cells produce immune-modulatory proteins that help to identify viruses, which allows it to escape detection⁹.
What else besides antiviral medications can help you fight an antiviral resistant, biofilm hiding, and intracellular manipulating adenovirus infection?
Here are three methods for stopping a stealthy adenovirus infection
Fortunately, there are three remedies and treatments that can help to overcome a growing adenovirus infection: essential oils, liposomal antiviral herbs, and Frequency Specific Microcurrent. These methods help to fight antiviral resistant adenovirus species, cut through biofilms, and penetrate into cells and reservoirs where the viruses are causing symptoms.
Strategy #1: Anti-Adenovirus Essential Oils Two essential oils have been found to inhibit adenoviruses, thyme and cinnamon. Thyme, had a minimum inhibitory concentration (MIC) against adenovirus-5 of 50 µl/ml in one lab study¹⁰. Thyme essential oil has antibiofilm properties against other microbes¹¹'¹². In another lab study, cinnamaldehyde, which is found in high concentrations in essential oils made from two types of cinnamon bark cinnamomum verum and cinnamomum cassia, had a MIC of 0.0195-0.315 mg/mL against adenovirus-3 in another study¹³. Cinnamon essential oil also has antibiofilm properties against many different biofilms¹⁴'¹⁵'¹⁶'¹⁷. Herbs also have anti-adenovirus properties.
Strategy #2: Liposomal Anti-Adenovirus Herbs In one study, hot water extracts two herbs Pisum sativum, aka garden peas, and Bauhinia variegata leaves and bark, aka Orchid tree, Camel's Foot Tree or Mountain-ebony, demonstrated half maximal effective concentrations (EC50) of
In other studies, these herbal compounds inhibited adenovirus-3: cinnamaldehyde from cinnamon¹⁹, shikonin from Lithosperm eyrthrorhizon root²⁰. , and astragaloside IV from Astragalus membranaceus²¹. These compounds from sweet basil were effective against multiple types of adenovirus: ursolic acid had an EC₅₀ = 4.2 mg/L on adenovirus-8, apigenin had an EC₅₀ = 11.1 mg/L on adenovirus-3, and linalool had an EC₅₀ = 16.9 mg/L on adenovirus-11²². Ethanol extract of echinacea purpurea inhibited the inflammatory cytokines produce in response to adenovirus-3 and adenovirus-11²³.
Processing these herbs into a liposomal mixture increases their ability to penetrate into macrophage cells²⁴, biofilms, joints, and the nervous system²⁵ where adenovirus can hide. Cinnamon is contraindicated in pregnancy, and in cases of excess heat (flushed face, red eyes, dry mouth and tongue) and bleeding²⁶. Lithosperm eyrthrorhizon root is cautioned in people with diarrhea or coldness in the stomach²⁷. Astragalus is contraindicated in cases of excess anger due to liver stagnation, excess heat, coldness in the lower abdomen, lesions caused by excess heat in the blood. This herb is also cautioned in pregnancy²⁸. Sweet basil is contraindicated in pregnancy²⁹. Echinacea is contraindicated in people allergic to ragweed, chrysanthemum, marigolds, or daisies³⁰. In addition to liposomal herbs, Frequency Specific Microcurrent can help eliminate an adenovirus infection.
Strategy #3 Antiviral Frequency Specific Microcurrent
Frequency Specific Microcurrent uses millionth of an amp electrical currents to reduce viral infections and inflammation. Frequencies for reducing viruses, inflammation, and promoting healing are combined with frequencies to target viruses hiding inside organs like the bladder in interstitial cystitis patients, the lungs and heart, and the nervous system in patients with memory and concentration issues. Frequencies can also be used to target intracellular viral infections³¹. Using multiple remedies and treatment can help to fight off a spreading adenovirus infection.
A combined approach helps to stop a stealthy adenovirus infection Just like opening up a set of nested dolls to find the tiniest one hidden inside, blood testing or an electro-dermal scan can help to detect an underlying adenovirus infection. Patients that have little improvement on antibiotics for Lyme disease have reported significant relief with anti-adenovirus essential oils, herbs, and frequencies. Persistent symptoms of fatigue and pain and inflammation in the bladder, lungs, digestion system, and nervous system have been markedly reduced with these methods. Since some of these methods have contraindications or cautions or may produce Herxheimer reactions, work with a Lyme literate herbalist and essential oil practitioner to develop a safe and effective strategy for your condition. - Greg
P.S. Do you have experiences where treatment or remedies helped you eliminate or reduce sweats, arthritis, and weakness from a brucellosis infection? Tell us about it.
Klinghardt, D. A Deep Look Beyond Lyme. 2012 Physician's Round Table. January 28th, 2012. Tampa, FL.
Morfin F., Dupuis-Girod S, Mundweiler S, Falcon D, Carrington D, Sedlacek P, Bierings M, Cetkovsky P, Kroes AC, van Tol MJ, Thouvenot D. In vitro susceptibility of adenovirus to antiviral drugs is species-dependent. Antivir Ther. 2005;10(2):225-9. http://www.ncbi.nlm.nih.gov/pubmed/15865216
Helmi K., Menard-Szczebara F, Lénès D, Jacob P, Jossent J, Barbot C, Delabre K, Arnal C. Adenovirus, MS2 and PhiX174 interactions with drinking water biofilms developed on PVC, cement and cast iron. Water Sci Technol. 2010;61(12):3198-207. doi: 10.2166/wst.2010.821. http://www.ncbi.nlm.nih.gov/pubmed/20555217
Del Pozo JL, Rouse MS, Patel R. Bioelectric effect and bacterial biofilms. A systematic review. Int J Artif Organs. 2008 Sep;31(9):786-95. http://www.ncbi.nlm.nih.gov/pubmed/18924090
Windheim M., Hilgendorf A, Burgert HG. Immune evasion by adenovirus E3 proteins: exploitation of intracellular trafficking pathways. Curr Top Microbiol Immunol. 2004;273:29-85. http://www.ncbi.nlm.nih.gov/pubmed/14674598
Horieh Saderi, and Maryam Abbasi, "Evaluation of anti-adenovirus activity of some plants from Lamiaceae family grown in Iran in cell culture," African Journal of Biotechnology, vol. 10, no. 76, pp. 17546-17550, 2011. http://www.ajol.info/index.php/ajb/article/view/97908
Soni KA., Oladunjoye A, Nannapaneni R, Schilling MW, Silva JL, Mikel B, Bailey RH. Inhibition and inactivation of Salmonella typhimurium biofilms from polystyrene and stainless steel surfaces by essential oils and phenolic constituent carvacrol. J Food Prot. 2013 Feb;76(2):205-12. doi: 10.4315/0362-028X.JFP-12-196. http://www.ncbi.nlm.nih.gov/pubmed/23433366
Desai MA., Soni KA, Nannapaneni R, Schilling MW, Silva JL. Reduction of Listeria monocytogenes biofilms on stainless steel and polystyrene surfaces by essential oils. J Food Prot. 2012 Jul;75(7):1332-7. doi: 10.4315/0362-028X.JFP-11-517. http://www.ncbi.nlm.nih.gov/pubmed/22980020
Liu, L. Wei, F.X. Qu, Z.Y. Wang, S.Q. Chen, G. Gao, H. Zhang, H.Y. Shang, L. Yuan, X.H. Wang, Y.C. The antiadenovirus activities of cinnamaldehyde in vitro. Labmedicine, vol. 40, 2009, p.669-674 http://labmed.ascpjournals.org/content/40/11/669.abstract
Pires RH., Montanari LB, Martins CH, Zaia JE, Almeida AM, Matsumoto MT, Mendes-Giannini MJ. Anticandidal efficacy of cinnamon oil against planktonic and biofilm cultures of Candida parapsilosis and Candida orthopsilosis. Mycopathologia. 2011 Dec;172(6):453-64. doi: 10.1007/s11046-011-9448-0. Epub 2011 Jul 15. http://www.ncbi.nlm.nih.gov/pubmed/21761153
Nuryastuti T., van der Mei HC, Busscher HJ, Iravati S, Aman AT, Krom BP. Effect of cinnamon oil on icaA expression and biofilm formation by Staphylococcus epidermidis. Appl Environ Microbiol. 2009 Nov;75(21):6850-5. doi: 10.1128/AEM.00875-09. Epub 2009 Sep 11. http://www.ncbi.nlm.nih.gov/pubmed/19749058
Oussalah M., Caillet S, Salmiéri S, Saucier L, Lacroix M. Antimicrobial effects of alginate-based films containing essential oils on Listeria monocytogenes and Salmonella typhimurium present in bologna and ham. J Food Prot. 2007 Apr;70(4):901-8. http://www.ncbi.nlm.nih.gov/pubmed/17477259
Chiang LC., Cheng HY, Liu MC, Chiang W, Lin CC. Antiviral activity of eight commonly used medicinal plants in Taiwan. Am J Chin Med. 2003;31(6):897-905. http://www.ncbi.nlm.nih.gov/pubmed/14992542
The antiadenovirus activities of cinnamaldehyde in vitro. p. 669. Gao H., Liu L, Qu ZY, Wei FX, Wang SQ, Chen G, Qin L, Jiang FY, Wang YC, Shang L, Gao CY. Anti-adenovirus activities of shikonin, a component of Chinese herbal medicine in vitro. Biol Pharm Bull. 2011;34(2):197-202. http://www.ncbi.nlm.nih.gov/pubmed/21415527
Shang L., Qu Z, Sun L, Wang Y, Liu F, Wang S, Gao H, Jiang F. Astragaloside IV inhibits adenovirus replication and apoptosis in A549 cells in vitro. J Pharm Pharmacol. 2011 May;63(5):688-94. doi: 10.1111/j.2042-7158.2011.01258.x. http://www.ncbi.nlm.nih.gov/pubmed/21492171
Chiang LC., Ng LT, Cheng PW, Chiang W, Lin CC. Antiviral activities of extracts and selected pure constituents of Ocimum basilicum. Clin Exp Pharmacol Physiol. 2005 Oct;32(10):811-6. http://www.ncbi.nlm.nih.gov/pubmed/16173941
Sharma M, Anderson SA, Schoop R, Hudson JB. Induction of multiple pro-inflammatory cytokines by respiratory viruses and reversal by standardized Echinacea, a potent antiviral herbal extract. Antiviral Res. 2009 Aug;83(2):165-70. doi: 10.1016/j.antiviral.2009.04.009. Epub 2009 May 3. http://www.ncbi.nlm.nih.gov/pubmed/19409931 Posted by poppy (Member # 5355) on :
For what it is worth, I passed this on. Take it or leave it. Don't have any personal experience here.
Posted by TerryK (Member # 8552) on :
sorry, I wrote the name in my diary wrong so I had to get my pharmacy receipt.
It is called nitrofurantoin mono-mcr
Posted by oxygenbabe (Member # 5831) on :
Try going off all grains, eating paleo diet. Leaky gut can play a role imho.
Posted by Marnie (Member # 773) on :
When you knock off yeast, you may get an "allergic reaction" i.e., up goes histamine.
Be prepared to counter (Benadryl) if you take a lot of VCO capsules.
By a lot, I mean 6 at one time. Prob. best to space out dosages.
Congrats on your upcoming marriage!
P.S. Poppy...p8 (Bb picks up in the tick's saliva) looks to be HTLV-1 a retroviral protein that we react to because we've been exposed to similar viral antigens in the past -> TGFb upregulated. Google this: HTLV-1 candida
Wikipedia: "Individuals infected with HTLV-1 are at risk for opportunistic infections"
[ 03-05-2014, 12:53 PM: Message edited by: Marnie ]
Posted by Phoiph (Member # 41238) on :
Tricia386...
There is research supporting the use of Hyperbaric Oxygen to effectively treat IC...
Tricia, if you are on facebook there's an awesome group intersitial cystitis occult bladder infection females only.
Posted by hopingandpraying (Member # 9256) on :
tricia386 - have you tried using the SOTA Magnetic Pulser?
I found this review on Amazon (page 3 for reviews about this item) while looking into the pulser for my son to help with his pain:
"This review is from: Sota Magnetic Pulser (Health and Beauty) This is my first review on Amazon. I have bought many products over the years but this is the first one I felt compelled to write about.
When the unit arrived I was suffering from hemmoraging cystitis, a severe bladder infection. I used the unit over my bladder for about 20 minutes. Over the course of that time the pain and spasms completely subsided and never have returned. WOW!"
Maybe this might help you?
FYI - I am no way affiliated with this product or Amazon, just trying to help.
Posted by Lymetoo (Member # 743) on :
If you have not researched Kerri Rivera's CD protocol, it might be worth looking into it. CD (MMS) kills most bacteria and many other infections. You can ask on the facebook group CDHealth to see if it might help your problem.
tickbattler
Posted by Pocono Lyme (Member # 5939) on :
Melatonin definitely helped my gastritis/heartburn for whatever that is worth.
Also, Meriva (curcumin) has a lot of studies showing it is good for the bladder and prostate problems. If you consider that some researchers think that prostate problems start with a virus, maybe Meriva would help.
I know these are reaches... but thought it might be worth a shot.
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